Monday, October 21, 2013

A Supreme Ruling on the Subject of Playing God

Three years ago, doctors in Ontario, Canada, argued that life-sustaining technologies and therapies were no longer in the best interests of a patient who had sustained serious brain damage during surgery.

Last December, in court, an attorney for the patient’s family disagreed: “The treatment is 100 per cent effective. It permits him to breathe.”

In the case of Hassan Rasouli, still alive in Ontario critical care, that seems to have been a winning argument with the Supreme Court of Canada, which is where the dispute wound up.

It is unsettling to write about a human being, a stranger in a strange land, and wonder whether he ought still to be alive. It's the sort of consideration I'd like to entrust to a professional. Which is, of course, the problem.

Doctors, the professionals who might best know, aren't to be trusted or empowered with this decision, according to the Supreme Court of Canada. That might be the right decision. But intensive care units already are notorious for doctor and nurse burnout; this doesn’t help.

This much is indisputable: Hassan Rasouli is alive three years after his physicians said life-sustaining treatment should cease. Rasouli, thought to be in a vegetative state following complications from surgery on his brain, could not speak to his own wishes. But his wife, a physician herself in her native Iran, disagreed with the physicians and sued to maintain his life-sustaining care.

This past week, the Supreme Court of Canada ruled in her favor. They said removing life support requires consent by the patient or substitute decision maker.

That Rasouli is alive is not to say he is expected to recover to anything near his life before the surgery, although he is considered now minimally conscious. But is he sentient?

Though this drama is playing out in Canada, it has an interested following in the United States, some of whom will attend a conference in Atlanta this week of the American Society for Bioethics and Humanities. As timing would have it, the conference is devoted to the issue of futile care in medicine, especially in those cases when the physicians and families cannot agree on what should be done. Members of Community Voices in Medical Ethics will attend to present from their report on the subject.

American media has taken little notice of the story, but in Canada, where assisted dying continues to be debated legally and politically in British Columbia and Quebec, there has been insightful reporting and commentary done on both sides of the Rasouli ruling. (See here, here, here and here). Some commenters online call this a rather minor ruling, but I don't believe that. Quite the opposite. Disputes over medical futility are relatively rare, but even more rare are the ones that make it to trial. The patients typically don't live long enough, and suits are dropped. Legislatures avoid the subject. So this ruling will be studied closely.

For me, these are points of interest:

The Patient
Hassan Rasouli, a Shia Muslim who emigrated in 2010 with his wife and two children from Iran to Canada, was left in a vegetative state three years ago from complications of surgery on a brain tumor. He has been hospitalized on life support (ventilator, feeding tubes, blood pressure drugs) ever since, but more recently was rediagnosed as minimally conscious.

What Do I Like About the Ruling?

I am happy for the wife and adult children, who fought long and hard for Rasouli. Doctors have long thought that therapeutic treatment served no beneficial purpose to Rasouli. But the family thought otherwise, and fought to keep him on life support. The court told doctors they could not remove the life support without the wife's consent. “My father’s life has changed, but he’s there," Rasouli's daughter told the National Post. "He’s human like any other human.”

Leaving this decision in the hospital’s hands could stoke “slippery slope” fears and compromise the foundational trust relationship between doctors and patients.

And the doctors in the dispute may have overreached. Ontario has a very good system for dispute resolution, the Consent and Capacity Board, and this decision may convince doctors in similar situations to make use of it.

Why Does Religion Even Matter?
In terms of his treatment as a patient, it shouldn't. But religious belief has been cited by the family as reason for keeping him on life support. And religion often is cited in cases of dispute over medical care of the dying. In Manitoba, before a dispute over the life-sustaining care of Samuel Golubchuk could be resolved in court, Golubchuk died. But before that happened, three critical care physicians from a staff of six resigned rather than continue treatments they described as torture. Golubchuk’s adult children argued that discontinuing life support would go against the strongly held beliefs of their Orthodox Jewish father. 

If Such Cases Are Rare, Then Who Cares?
An intensivist at Massachusetts General Hospital estimated that disputes over end-of-life care have become perhaps a monthly ordeal on an urban critical care ward. But if you're the doctor or nurse repeatedly changing dressing, vacuuming the throat or otherwise doing procedures for no apparent benefit to the patient, then it matters a great deal. Life support arguably becomes a vehicle for prolonging abuse.

Another reason to care is the third rail of any conversation about medical care: Cost. Recently, the Republican candidate for US Senate from New Jersey said if someone else gets cancer and lacks health insurance, "that's not my problem." He was defeated, but a lot of people voted for him. It's been estimated that maintenance of one patient in an ICU for a year costs $1 million. Canadian taxpayers will pay a high tab for Rasouli’s care.

Who Is Hurt By Keeping the Man Alive?
Anyone who is morally or ethically compromised by ordering or delivering the man's daily care, the doctors and nurses especially. If the medical team believes it is providing care in the patient's best interests, then treatment that causes some pain or prolongs suffering can be justified. Lacking a belief that you are serving the patient's best interests, it is simply bad care. And the decision makers who survive such patients often experience grief compounded by profound regret. 

What’s Disappointing in the Ruling?
Although the ruling is a rare firm decision on decision-making in end-of-life medical care, it does not address underlying problems that cause such disputes to become intractable. Physicians and nurses will continue to be forced to provide care that goes against their ethical or moral principles, which can only increase burnout in an already stressful field. Long-term life-sustaining is not what ICUs are intended for, and some fear the ruling might lead to changes in admission standards for critical care patients.

Wednesday, October 9, 2013

A US Export: End-of-Life Guidelines

Name the American physician-author whose checklist has been adopted in the United Kingdom for end-of-life medical care.

Did you guess Atul Gawande? The Brigham & Women’s surgeon and author (“The Checklist Manifesto,” etc.) would have been my guess, especially as he’s collaborating on that subject with palliative specialist Dr. Susan Block, also of the Brigham.

But the correct answer is Monica Williams-Murphy. If that’s a surprise, it should be a pleasant surprise.

Indeed, it’s good to see that Williams-Murphy’s work is gaining recognition and influence.

Williams-Murphy co-authored the book “It’s OK to Die” (see review) and blogs at That is, when she’s not practicing emergency medicine in Huntsville, Alabama.

The essays and guidelines in both the book and blog are significant contributions to the literature of medical care at the end of life. Hers is an especially important voice for two reasons.

One, she’s an emergency physician, and for better or worse, the emergency room is where the poor and uninsured go for their care. Also, ER physicians regularly have the thankless task of diagnosing and treating urgent health problems with little or no knowledge of the patient or the patient’s values.

Perhaps more important, at least politically, is that Williams-Murphy is not from Massachusetts or another so-called Blue State. She practices in Alabama, politically as Red as a state can get. 

I’ve got nothing against Boston doctors. They’re among the best anywhere, and some of them saved my daughter’s life. I consider it a privilege of living in Brookline, Massachusetts that I’m in walking distance of Children’s Hospital Boston and several world-class centers of care and healing.

But there’s no denying that Harvard Medical carries elitist baggage with some of the American public. And maybe this exposes a bias on my part, but an elitist tag is not a problem for an emergency physician in Huntsville, Alabama. Geography gives Williams-Murphy credibility. That she has something important to say helps, too.

So I considered her place of practice notable when I first read “It’s OK to Die.” And I was glad to read this week that Norfolk & Suffolk Palliative Care Academy in the United Kingdom has adapted her guidelines in creating its online resource at

Be ready for it will help you to talk openly about dying and plan ahead so that you can make the right choices about end of life care,” the website says.

Another positive in this: The launch of follows by only a couple of months the demise of the Liverpool Care Pathway for the Dying Patient. That effective, hospice-inspired framework for end-of-life care in the United Kingdom was hurriedly implemented and poorly communicated in some locations and was blamed for patient neglect that led to early deaths. It is now being phased out, and dismissed by some as “tick-box medicine.” 

The solution to disputes over care is in more dialogue, not less, among families, communities, and doctors and patients. In this, a well-considered checklist can be helpful.

In her book, Williams-Murphy agrees with the American Medical Association “that there is no good reason to either allow or cause unnecessary suffering at the end of life. Sadly, we have arrived at a place in American history where this unnecessary suffering is too frequently occurring.”

The collaboration between and Dr. Williams-Murphy is a welcome sign that the checklist isn’t going away.

Tuesday, October 8, 2013

A Bioethical Shutdown

I visited today hoping to read new educational materials from the Presidential Commission for the Study of Bioethical Issues. The new resources are based “on real-life ethical challenges addressed by the Bioethics Commission, including its investigation into the 1940s U.S. Public Health Service STD research in Guatemala, and how to advance whole genome sequencing while protecting individuals' privacy.”

The Guatemala study is of particular interest to Community Voices in Medical Ethics, following our own study calling for stronger advocacy for research participants -- and to stop calling those participants “subjects.”

Alas, catching up on the Presidential Commission’s new materials will have to wait. My education was limited to this reminder of the government shutdown:

“Due to the lapse in government funding, is unavailable during the government shutdown. The Presidential Commission for the Study of Bioethical Issues is not able to respond to inquiries until appropriations are enacted. Updates regarding government operating status and resumption of normal operations can be found at  We regret any inconvenience.”